I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Wednesday, August 7, 2013

Alice and Dorothy

I have tried clicking my heels on more than one occasion, wishing ourselves a return trip home, channeling Dorothy and those fancy kicks of hers. There is something about these two sitting down together that just tickled me when I saw it on FB. (And if Dorothy is any kind of friend at all, there is something stronger than tea in Alice's cup.)

That is no lie.

I have often used the phrase "going down the rabbit hole" to refer to the whole cancer experience because it is just so otherworldly, not unlike poor Alice's journey. Suddenly there are strange cakes to eat, bottles of stuff to drink and everyone seems to be speaking in an odd language that only somewhat resembles English. The rules are upside down. Nothing seems to make sense. Your body is not your own. Everything is foreign. Surreal.

We too, have seen some weird shit.

A friend of mine has a son going through treatment right now, and mentioned that they worried that he might need a transfusion, which he has never had. I vaguely remember the first time Brent needed transfused, our worry and concern, having never done something like that before. He has had nearly 40 transfusions to date. We are very grateful for the donors, but not remotely anxious about the actual transfusion, when such an occasion arises. We have spent far too much time 'Through the Looking Glass,' if such a thing has become routine.

We were told at one point to be alert for the symptoms of narcotic withdrawal on our 12 year old, several weeks after his 18 hour surgery. "Umm..can you tell me what they are?" having no practical experience with narcotics, much less the associated problems with weaning your child off of them. We do not bat an eye at a 5 hour surgery, either, considering one of such length a "middle of the road procedure."

We wound our way through genetics. I have thought at length about myself at the earliest stages of my own development, where somehow, I went rogue in the most unusual of ways. I have talked to my kids from a young age about how some decisions are critical and can have a huge impact on their life. What was my microscopic 64-cell self thinking? Or was it much later? Regardless, that had some impact, that genetic 'improvisation.' As a mosaic, I am a freak, even among mutants.

I was always a strong believer in nurture over nature. Somehow, I must concede that nature scored one in this skirmish.

Brent experienced hyperbaric oxygen treatments, without ever visiting Michael Jackson's Neverland Ranch, which as I understand it, is what many people in the general public associate with HBO. Yes, it is a real treatment. With insurance codes and everything.

I took my 10 year old to my OB/GYN to have her lopsided ovaries checked out today. (all good there, btw) It was absurd trying to fill out the electronic patient questionnaire. There were not nearly enough spaces to explain Lauren's cancer history, and far too many other questions, all of which should have been covered with the blanket observation that "She is 10," Unfortunately, this was not one of the options to select from. Most 10 year olds don't go, of course.

We have been down the rabbit hole for a long time, and have begun to peek our heads out a bit, which is kind of an adjustment, and rather bewildering actually, being exposed to sunlight after so long. We are blinking and rubbing our eyes, looking at the great outdoors. Dan says that the weather has been 68 degrees and fluorescent for 2 years now.

Our lives were hit by Dorothy's tornado. "It's a twister! It's a twister!" Now, we are sweeping up the rubble, literal and figurative. I have stored away IV supplies worthy of a small ER, and wound care supplies I hope to never need again. I have shut down my kitchen pharmacy, at long last. We get to take a 2 month hiatus from pediatric oncology...scans are not scheduled until mid October.

Dan and I have looked around at what remains, and are grateful. Sure, there are things that we need to realign, things that took a back burner, low on the priority list for too long. But at the end of the day, we are poking our heads out of the rabbit hole as a family. There are some scrapes and bruises, naturally, but we are all here. This, we do not take for granted.

There is a saying that a person doesn't get cancer, but a family does. I am pretty sure they didn't mean this particular genetic problem, whereby a family literally gets cancer, but rather that cancer affects all members of a family. I think that we are doing OK overall. We would prefer less screen time for the kids (both on electronic devises, as well as in hospital), but what parent out there doesn't? Probably, we will adjust to 'new normal' just fine.

Everyone who does this cancer detour has a different experience. But it universally crazy. Oz, Wonderland, Lilliput... Hades... When Bizarre-o-world begins to seem normal, you know it is time for a break. We were due for some time away, and I am very happy to bid farewell to the Wizard and check out of Hotel Wonderland.

We know that we are likely to be back at some point, given the LFS. Dan says, if it is 2 months or 20 years (I vote for 20 years-longer, actually) we should spend our time in the meanwhile living, with joy and happiness. No argument from me, with the addition of vigilance. Joy, happiness and vigilance.

And of course, I now have Grace Slick singing in my head:

One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don't do anything at all
Go ask Alice, when she's ten feet tall

And if you go chasing rabbits
And you know you're going to fall
Tell 'em a hookah smoking caterpillar
Has given you the call
To call Alice, when she was just small

When the men on the chessboard get up
And tell you where to go
And you've just had some kind of mushroom
And your mind is moving low
Go ask Alice, I think she'll know

When logic and proportion have fallen sloppy dead
And the white knight is talking backwards
And the red queen's off with her head
Remember what the dormouse said
Feed your head, feed your head

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.